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People in the bleeding disorders community face many challenges, not least of which is dealing with the financial burden of outrageous copays and out-of-pocket expenses. For one Severe Factor 8 patient in Orlando, dealing with this burden has not come easy. Here he shares his anonymous story:

“The medication that I take finally works for me after five years of changing products and incurring multiple bleeds, stress, crawling to the bathroom because I cannot walk, and infusing sometimes twice a day for several days in a row to get a bleed under control.

I have had to send in an infusion log to justify getting my NORMAL prophylactic medications. My insurance company requires this for a prior authorization two times per year for medication that I have taken since I was two days old.

Unless I have a bleed, my insurance company will no longer ship my as-needed doses for bleeds. They send me 3 doses for bleeding episodes; if I have not had any documented bleeds they will not send the as-needed doses for bleeding the next month. Do they not understand that, God forbid I have an emergency, I will need as much factor as I can get if I’m injured? This puts me at serious risk.

Why do my copays and prescription copays not count towards my Out-Of-Pocket (OOP) expenses?

My OOP expenses per member is $7,500 and total OOP max is $15,000. I paid $15,000 OOP in 2019 for my medical bills on top of paying $22,000 in 2019 for my insurance premiums; I am self-employed and own my business. My business partner and I paid over $44,000 in total for our health plan in 2019. This does not include the OOP for my pharmacy co-pays which topped $5,000 in 2019.

This is a financial burden for me and for my family. We had to put many of those expenses on credit cards with interest rates of 22% and higher, further exasperating the financial burden that we face. This will not change in 2020; now that I am forced to work from home, I still have to pay for health plan, copays for my medication, credit card bills and medical bills that we are on a payment plan for from last year.

On top of these expenses, I incur a gym membership for $32 per month to try to stay healthy and in shape. I eat healthy which costs more. So it’s much more than just the healthcare premiums. We take control of our health, exercise, and eat healthy which is more expensive than eating processed and canned foods.

This is a problem.”

A big part of the problem is copay accumulators. These are health insurance policies that prevent any copay assistance from counting towards any copay deductibles or out-of-pocket limits. That means that patients are left with the burden of paying copays and out-of-pocket expenses from the prescription in full.  Sometimes they don’t even realize this until it’s time for a procedure.   Meanwhile, the insurance company gets paid twice – once from the copay assistance and once from the patient. Bills have been introduced at the legislative level to try and ban copay accumulators, but they haven’t moved far.

Your voice matters in helping these issues come into the spotlight so that patients like our patient above don’t have to suffer through financial uncertainty. Contact info@bleedingdisorderscoalitionofflorida.org to learn how you can get involved in helping this issue get pushed through the 2021 legislative session.

Natalie Rubin
Resides: Tampa
Hometown: Streamwood, Illinois
Involvement with HFGF: Four years

Natalie Rubin has first-hand knowledge of step therapy, the controversial treatment plan designed to save insurance companies money. Also known as “fail first” protocols, the patient is required to “fail” on an insurer-preferred drug therapy based on a similar diagnosis before it will cover doctor-subscribed therapy. Diagnosed at age 12 with type one Von Willebrand and a patient of Ehlers Danlos syndrome, a connective tissue disorder that brings with it illness on a regular basis, Natalie is now speaking out against the therapy.

Diagnosed at age 12 with type one Von Willebrand and a patient of Ehlers Danlos syndrome, a connective tissue disorder that brings with it illness on a regular basis, Natalie is now speaking out against the therapy.

“The goal is to get rid of step therapy all together,” says the University of South Florida freshman. “Step therapy is not effective and not helping anybody.”

Advocating on behalf of the Bleeding Disorders Coalition of Florida (BDCF), Natalie says when she was in junior high school her insurance company wanted her to take an anti-depressant for her Ehlers Danlos instead of her prescribed Lyrica.

“There were side effects, and I missed a lot of time in school because it,” she explains. “I was sick, and I had an abnormal gait that made me wobbly. Not good for someone with a bleeding disorder.”

Hemophilia Foundation of Greater Florida (HFGF) Executive Director Fran Haynes says these protocols can create life threatening problems by preventing patients from gaining access to the most appropriate medication for their condition. Further, for a member of the bleeding disorders community, step therapy is always inappropriate because the consequences of a “failure” are too serious. HFGF is a partner in BDCF, along with the Florida Hemophilia Association.

“The risk of a major bleed or cumulative damage from repeated bleeding episodes are too high,” Fran says.

BDCF is currently supporting two bills in the Florida legislature that deal with step therapy. If step therapy is allowed to continue, the BDCF asks that it must be subject to reasonable constraints, including patient exceptions and covering the provider-prescribed medication. At least 26 states have enacted some form of step therapy protections.

“Doctors should have the final say on whether a non-preferred drug may be dispensed,” notes Fran.

“The doctor wants you to take one drug, but the insurers won’t cover it unless you take others first,” adds Natalie. “They claim it works. It does not. It’s not the truth.”

Natalie is pictured here at the 2020 Bleeding Disorders Coalition Legislative Days.

 

HFGF Virtual Hug

My name is Genesis Erickson and I was selected to be a member of the National Youth Leadership Institute (NYLI). This is a program at the National Hemophilia Foundation (NHF)  for 18-24 year olds in the bleeding disorders community. The program provides us leadership opportunities to encourage personal growth, learn how to effect change, and positively influence others. I am excited to learn and share experiences of living with a bleeding disorder while learning how to become a distinguished leader. 

This past January, I had the opportunity to attend the NYLI First year leadership training in New York City. At this event, I met the other 8 people in my cohort who come from all over the country. We had public speaking workshops, met with each department of NHF, and worked on self-development as well as emotional intelligence. It was a wonderful introduction to the program and I am so excited to continue and see where NYLI leads me.

The next month, I was on a plane to our nation’s capital for Washington Days! Here I got to tell my personal story of living with a bleeding disorder to our elected representatives. I was so happy to stand beside other people in the Florida bleeding disorders community as we advocated for a continuation of funding to our HTCs and for access to skilled nursing facilities for people with bleeding disorders. After the day on the hill, NYLI members learned all about intersectionality and then provided recommendations to the NHF on how we celebrate diversity in the bleeding disorders community and include people of all different backgrounds. 

In the future, I will learn how to facilitate workshops and use those skills to deliver workshops to kids and teens all over the country. We will be a part of NHF’s annual bleeding disorders conference each year. I will also work closely with HFGF throughout my time in NYLI and after. I encourage any young adults who have an interest in becoming a change maker, especially within the bleeding disorders community, to apply to this program in the future. I am excited to serve our community in the years to come!

How To Advocate For Yourself

HFGF encourages you to advocate for yourself! Click here for a brochure to print out.  HTCs – Please share with your patients!

Being your own advocate means asking for what you need in a direct, respectful manner.

To Be Your Best Advocate:

  • Believe In Yourself
  • Know Your Rights
  • Have Your Facts Straight
  • Decide What You Want
  • Plan A Strategy
  • Target Your Efforts
  • Gather Support
  • Express Yourself Clearly

You Have To Advocate Yourself:

  • With Your Medical Team
  • Through Insurance Issues
  • Legislatively

Advocating For Yourself Medically:
Knowing how to navigate the healthcare system will allow you the best treatment possible. If you and your HTC team are partners in your healthcare decisions, you’ll feel ownership of your wellness. Standing up for yourself medically is your right.

Advocating For Yourself With Your Insurance Company:
It is your right to appeal your insurance company’s decisions on claims. Communicate with your HTC team.   They can help. Be patient: This may take time.

Advocating For Yourself Legislatively:
Laws are made for you and the bleeding disorders community statewide and federally. You can have a voice in what laws are passed by understanding the process and identifying your legislators. HFGF is part of the Bleeding Disorders Coalition of Florida and is here to help you advocate for the bleeding disorders community legislatively.  Contact info@bleedingdisorderscoalitionoflorida.org if you’re interested in getting involved legislatively.

HFGF has a social worker and outreach nurses on staff to help you advocate for yourself.  Contact leannebuchanan@hemophiliaflorida.org for assistance.  Click here for a list of Florida Hemophilia Treatment Centers.

CHANGE THEIR WORLD. CHANGE YOURS. THIS CHANGES EVERYTHING.